A conversation about cancer no one is having. (It’s not brave. Or inspirational.)

THERE’S a conversation about cancer no one is having. It’s not brave. It’s not inspirational. And Ginger Gorman has been waiting a decade for it.

I’VE been waiting nearly a decade to have this conversation and never thought the day would come.

In society, some discussions are not allowed; they are too far removed from what is considered usual or acceptable. Or, there’s no framework for others to understand what you’re saying. They just won’t go into the dark corners with you.

But when I read 32-year-old Elizabeth Caplice’s blog, Sky between branches, I understand this just might be the moment. Elizabeth, a petite and talented library archivist with tattoos and fire engine-red hair, is rapidly dying of bowel cancer.

Elizabeth Caplice’s honest blog details the ugly reality of bowel cancer.

“FIGHT. Fight. Fight the cancer. Fight the Battle. Stand Up against the BATTLE,” Elizabeth writes on her blog.

“What am I fighting for, guys? What am I actually fighting? ‘Fighting’ cancer doesn’t mean I’m going to stay alive — calling what I do a fight upsets me.

“I lose nothing, I beat nothing, I fight nothing. I have incurable terminal stage IV colorectal cancer with secondary tumours in my liver and my lungs and … there is nothing I can do to stop this or slow this down. It is a simple and harsh and sharp and ugly fact,” she writes.

Her writing is fearful, angry, loving and brilliant.

“I am not now some stronger, better, braver, more courageous person because I’m waiting for my liver to fail,” she states.

And then this sentence, so close to home it strikes me through the heart: “This f***ing bleeding falling apart worthless miserable body of mine.”

The words open a door that seemed closed. Almost without conscious thought, I sit down and rapidly type Elizabeth an email.

“Just so you know,” I write, “back in 2007 I also had cancer. And like you, I really struggled with the idea of ‘fighting’ cancer or being viewed as some kind of hero or heroine in a ‘battle.’

“I remember that people would say to me: ‘You’ll get through this.’ (How would they know…?)

“And I never understood this kind of dialogue or what it was for. I’d just reply: ‘Maybe I will, maybe I won’t. We’ll see’.”

I ask if Elizabeth will meet me. I’m not religious, but find myself hoping and praying out loud she will say “yes”. And she does.

The first two times we meet, our conversation is aborted. When you are dying, the life that’s left becomes a flurry of activity. The phone rings all the time. A nurse turns up. Then a government-funded cleaner knocks on the door. And then a courier with urgent medical supplies. On it goes. After 15 minutes, Elizabeth sends me away.

The second time we meet, she’s too upset. Things are hard; it’s been a bad night.

Then, a few days later, she rings.

“Today is a good day,” Elizabeth says, “you need to come today.”

Apart from the small animal sounds made by her rabbit and two cats, it’s quiet in Elizabeth’s apartment and smells like botanical body products.

“That’s because I feel like I smell like shit the whole time,” Elizabeth says.

I tell her she doesn’t smell like shit.

“No one can smell it, but you’re aware of it. You feel it. There’s a bag, it’s stuck on you. And you have to look at it,” she says.

“It” is Elizabeth’s stoma.

“A stoma is where they have to cut through your abdomen into your bowel, remove your bowel so … the bowel itself is exposed, and rather than going to the bathroom through your bum, you have a little pouch put on the front of you, and that’s where the poo comes out.

“And several times a day I have to take that off, put it in a bin, put on a new one. It is disgusting,” she says.

Elizabeth Caplice’s honest blog details the ugly reality of bowel cancer.

While we talk, the stoma randomly emits prolonged and undignified farting noises, which Elizabeth describes as “comical, whoopee cushion sounds.” She thinks it’s funny.

Elizabeth and I fervently agree — the cancer narrative is “a coat that doesn’t fit.” In her head, there’s an image of a “cancer hero” perpetuated by the media and it’s enraging.

“There’s a woman in a long floating white dress and she’s staring out into the ocean with a shaved head or a beautifully-done turban and neatly drawn eyebrows and …[there’s] a single tear running down her face,” Elizabeth says.

“There’s nothing nice or clean or romantic or wearing-a-white-robe on a beach about bowel cancer,” she counters, “it is grotesque.”

To illustrate this point, Elizabeth explains that sometimes — usually at night — her stoma bleeds unstoppably. She ends up lying on the bathroom floor with a handful of Chux while poo is “oozing out of my belly”.

While Elizabeth is lighthearted about this scenario, it frequently lands her and partner, Alex, in the hospital emergency department.

When I ask about leaving Alex behind, Elizabeth says she feels “great comfort” in thinking her partner’s life will go on.

“I’m happy that Alex will have a life that will go past my life. I’m excited for the things she will experience. I feel sad that I won’t get to share those things with her, but I am excited that she will get to experience them,” Elizabeth says.

She makes a point of paying tribute to the role of carers and the “endless, often extremely unpleasant thing to have to do, to watch someone you love fade and die before you.”

Listening to Elizabeth talking, something strikes me. Given what we’ve been talking about, it’s hard to spit the words out.

I tentatively suggest she is brave — but not for being a cancer hero or heroine.

“You’re talking about stuff that nobody else will,” I say.

Elizabeth smiles and generously accepts this from me.

“If it inspires someone to go, ‘I had irritable bowel and my doctor’s not taking me seriously, I’m going to get a colonoscopy’. That’s what I want to do,” she said.

“I probably wouldn’t be dying right now if I had that colonoscopy five years ago because they would have found that polyp and bowel cancer is such a treatable cancer … if you find it early enough.”

The day after we meet, Elizabeth is having a living wake. She’s hiring out a fancy cocktail bar and inviting her loved ones. As a kind of tongue-in-cheek homage, the cocktails served at her event will be named after her doctors.

“I really like the idea of celebrating the life that I’ve had which is not necessarily as long as other people’s lives, but is still a rich and exciting and fantastic life,” she says.

Raise a glass to Elizabeth. She’s letting us see the sky between the branches.

Here’s to Elizabeth.

You can hear Ginger and Elizabeth have the conversation about cancer no one else is having on ABC Radio National’s program “Life Matters” today (Wednesday, May 25).

If you need cancer information of support, call the Cancer Council: 13 11 20 or go to their website: http://www.cancer.org.au

Ginger Gorman is an award winning print and radio journalist, and a 2006 World Press Institute Fellow. Follow her on twitter: @GingerGorman